For those of us with NOT SO ROSY caregivers

herdizziness
herdizziness Member Posts: 3,624
edited September 2011 in Colorectal Cancer #1
Funny thing this cancer, from my point of view, I so admire those that stand beside their man or woman, WOW, I admire you!!! You are truly it seems the few, and so admired by me, by so many of us.
For those of us, who do not have that miracle spouse, for those of us, whose spouse couldn't deal with it, the ones that left us physically or mentally, this is for us for a time not to be alone and yet we are.
A pondering of where we went wrong or what we did? What made them think they couldn't take another minute of cancer, that they ran away either physically or mentally, the ones that took to pills or alcohol? AT what point that we, the cancer victims in our struggle, our fight, (and we did fight), bring them down?
What point did they decide it was too much?? What happened in sickness and health? That first encounter or the second with cancer? When did they decide it was too hard to handle? We see caregivers here saying they've reached the end, guess we didn't mean that much in the beginning. We see our friends whose spouses have tuned them out or left. This my friends is not their wrong doing, no, they loved us well, but "it" cancer wore them down, they were but human mortals, the same as we, but that [email protected] camel that broke the proverbial back, well...it just broke theirs. They tried hard, but were not quite so tough.
I don't know about you, mine loves me, somewhere deep down I know he does. But cancer is too much, so he escapes to the bottle, curse the bottle, curse cancer, this is how the weak deal with our cancers, running away, hiding or hiding in the bottle or drugs or leaving us mentally or entirely. So I indeed curse cancer.
Winter Marie
«13

Comments

  • marqimark
    marqimark Member Posts: 242
    curse it
    I wanted to hide behind alcohol but couldn't tolerate it.

    I just vegged out during the lowest health times.

    My wife moved out of the bedroom. I looked like death, maybe I smelled like death also.

    All better now (except a little nerve damage to hands, feet, anal area and ureatha area).

    Mark
  • Buckwirth
    Buckwirth Member Posts: 1,258
    William Blake

    Love seeketh not itself to please,

    Nor for itself hath any care,

    But for another gives its ease,

    And builds a Heaven in Hell's despair. 

    William Blake 

  • Phoebesnow
    Phoebesnow Member Posts: 600
    Alcholism
    Leave the aa website up for him. Maybe get a copy of the blue book and leave it for him. Your soul is so beautiful winter Marie. I cherish your words. I will pray for you both.
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Some relationships just can't survive a crisis
    I wish we did know the answer to why some relationships can survive, even become stronger, while others fail to hold up under a crisis situation. Even the duration from diagnosis to 'desertion', be it mental, emotional or physical, varies.

    Cancer is h_ll in so many ways. Most of those it has never touched have no idea how many different fronts we fight on. We step up, take it on the chin, and fight on.

    I envy each person here who has that great care giver or loved one who willingly takes it by their side.

    But if I can't have my own personal 'great one', I do give many thanks for the support offered here. While 'cyber hugs' don't quite measure up to the real thing, the ones given here are right up there, because they come from those who know they are needed.

    You are right Winter Marie...curse cancer and all it does to the many aspects of our lives.

    Marie who loves kitties
  • Geri1959
    Geri1959 Member Posts: 37
    rosy caregiver
    I want to be that rosy caregiver, however it is very hard when the person you are caring for just gives up, and this is before the cancer has started this is after the 5th chemo... he thinks about tomorrow instead of today... I want him to think about today, think about drinking the 600 calorie shake that will help him build his body back up from the 20 lbs he lost, during the chemo think about resting when he needs it. Think about living not about dieing... I HATE CANCER!!!!
  • KathiM
    KathiM Member Posts: 8,028
    It really wasn't until he was ill....
    That my beau understood what it was for ME to be ill. It took alot of discussion, and I needed to accept that I needed to verbalize my feelings and my needs...in a positive way, but not all rosy....

    With this newest bowel obstruction, he has learned the drill. He doesn't try to impose his will on me, including letting ME decide if and when we went to the 'Eerst Hulp' (Emergency room).

    I don't know if this helped, but it helped our relationship alot...

    Hugs, Kathi
  • Katteraus
    Katteraus Member Posts: 3
    Cancer is not easy on anyone!
    I have been with my husband for 15 years, he is a provider, works hard & he does love me. He was an alcoholic when I met him and still is! I have always been a strong person can deal with anything with a smile on my face. This past July I was diagnosed with rectal cancer stage 1 95% cureble but I still had to indure chemo and radiation, it has been a very rough road but have survived the chemo and radiation but the one thing I can't get over how my husband completely shut down on me! He has never been the lovey, touchy kinda of guy but I expected him to man up but instead he backed down and continued living his life as if I were not sick and so I hate him for that, I wished it were him that had to go thru what I had, telling him it shouldn't be me that is sick but him. Again, I have to understand he does love me but was never raised to be the "caregiver" like I expected him to be but he was still the man he only knew how to be the "provider"! So when you question the reaction of your spouse when your diagnosed with cancer just remember not all can handle it like we expect them too but they do love us!
  • karen40
    karen40 Member Posts: 211
    I hear ya, sister!
    To those who have to do it alone, my heart and prayers are with you.
    I know you're out there. I feel you and love you.
    Karen
  • laurettas
    laurettas Member Posts: 372
    Fear
    Don't you think it is fear? Cancer scares us so much and I think it is just more than some people can handle. And I think it is a sex thing also. I have seen the same thing when a spouse dies. The widower is much more likely to quickly jump in to another marriage than the widow. Don't think many men have learned how to deal with those strong emotions and tend to run from them.
  • Sonia32
    Sonia32 Member Posts: 1,071
    Hey Winter
    Good post. As some of you will know what I had to deal with my ex husband, who started off taking charge etc but by the end of it all he couldn't handle it, and was generally blaming me for the cancer and everything associated with it. Ok if I didn't have my online csn family, my friends, my family (no matter how dysfunctional they are, my sister being there for me) I don't think I would have got this far. I agree with things everyone has said, especially what Phil did, it also depends on what your relationship was like before hand as well. But at the end of the day, the care givers who can't handle it, well all I can say is everyone is different, we all face life's challenges in our own unique ways, some are more stronger then others. What I have found is that, those who act strong generally when it comes to something like a life threatening illness they crumble.

    Hugs to all who have stood by their families, to those who haven't well as I said we all handle things differently
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    Sonia32 said:

    Hey Winter
    Good post. As some of you will know what I had to deal with my ex husband, who started off taking charge etc but by the end of it all he couldn't handle it, and was generally blaming me for the cancer and everything associated with it. Ok if I didn't have my online csn family, my friends, my family (no matter how dysfunctional they are, my sister being there for me) I don't think I would have got this far. I agree with things everyone has said, especially what Phil did, it also depends on what your relationship was like before hand as well. But at the end of the day, the care givers who can't handle it, well all I can say is everyone is different, we all face life's challenges in our own unique ways, some are more stronger then others. What I have found is that, those who act strong generally when it comes to something like a life threatening illness they crumble.

    Hugs to all who have stood by their families, to those who haven't well as I said we all handle things differently

    LOL........
    Quote...."Don't you think it is fear? Cancer scares us so much and I think it is just more than some people can handle. And I think it is a sex thing also. I have seen the same thing when a spouse dies. The widower is much more likely to quickly jump in to another marriage than the widow. Don't think many men have learned how to deal with those strong emotions and tend to run from them.".......unquote


    ......May I ask where you get your statistics ? or is that simply cannonfodder from a relationship gone wrong ? Some of that stereotyping is why that most men don't get their children in custody battles unless the wife is considered "loonytoons" or the man pays an unexorbitant amount of child support because the wife has to live as she did before, whether the kids are cared for or not ?

    Not sorry, they are your feelings.....and these are mine on that subject...and yes my relationship with my wife is in the chitter but we have managed to become friends to keep our household together and for the sake of our children.

    This is not against you personally, I admire anyone and everyone that faces this beast caregiver or patient, the journey is the same but the end result isn't, and whether we are man or woman we maybe instead of ridicule (maybe a little rash but loss for a better term) we support each other and instead of blaming a man for maybe not having inner feelings become aware that someone in the family group has to have a leadership role, and in my family I am considered a leader with my wife 50% in every aspect of our decisions of family matters, when I become inable to lead then she will assume the Alpha role in the relationship and all will still be well...Its not because men or women are less heartfelt, or stronger, its the ability to be a partner in every aspect of a relationship, and to know that when one partner slips the other is there to catch and visa versa, no matter who is caregiver or who is patient......We are all equal, all have the same basic instincts, and all share in success and failure, we should never side when it divides us, for then we find weakness, and as a whole we can better our chances at survival by being bonded at the hip in this journey.....Please take this as an act of clearing up something that just seemed to hit me wrong and probably at a bad time for me, and not personally, as I say things sometimes that I don't really mean but tend to say it anyway.......Love and my best to you........Clift
  • ddpekks
    ddpekks Member Posts: 162
    Caregiver's perspective here....
    I'm a caregiver. I am woman, hear me roar. I am strong, I am unbreakable, I am invinsible. I can do anything. And, I'm as full of poop as a Christmas Turkey, because these are all the things I thought when this cancer journey first started. Bunk!

    I'm doing it, but I can say with all honesty, there have been times when I thought if I don't walk away (or crawl in a bottle of pills, or booze, or whatever) that I would watch myself dissapear forever.

    And, I believe that if my personality were just a shade different I WOULD walk away. That's how hard it is sometimes. But, luckily, I'm not much of a drinker, hate taking pills and am just mean enough that I refuse to lose at anything, including seeing my husband beat cancer. So, to a certain extent, I'm still here out of spite!

    Some people aren't that mean or that strong or that emotionally capable of dealing with this beast. And, I, for one, can truly understand that.

    Does any of the above make any sense?
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    ddpekks said:

    Caregiver's perspective here....
    I'm a caregiver. I am woman, hear me roar. I am strong, I am unbreakable, I am invinsible. I can do anything. And, I'm as full of poop as a Christmas Turkey, because these are all the things I thought when this cancer journey first started. Bunk!

    I'm doing it, but I can say with all honesty, there have been times when I thought if I don't walk away (or crawl in a bottle of pills, or booze, or whatever) that I would watch myself dissapear forever.

    And, I believe that if my personality were just a shade different I WOULD walk away. That's how hard it is sometimes. But, luckily, I'm not much of a drinker, hate taking pills and am just mean enough that I refuse to lose at anything, including seeing my husband beat cancer. So, to a certain extent, I'm still here out of spite!

    Some people aren't that mean or that strong or that emotionally capable of dealing with this beast. And, I, for one, can truly understand that.

    Does any of the above make any sense?

    Perfect Sense...........
    Thank you......... :)

    BTW....chessie or Lab or both...very pretty
  • ddpekks
    ddpekks Member Posts: 162
    Buzzard said:

    Perfect Sense...........
    Thank you......... :)

    BTW....chessie or Lab or both...very pretty

    Thanks, Buzz
    This is our Maximum Chocolate Overload....full blooded Chocolate Lab.
  • eibod
    eibod Member Posts: 160
    ddpekks said:

    Caregiver's perspective here....
    I'm a caregiver. I am woman, hear me roar. I am strong, I am unbreakable, I am invinsible. I can do anything. And, I'm as full of poop as a Christmas Turkey, because these are all the things I thought when this cancer journey first started. Bunk!

    I'm doing it, but I can say with all honesty, there have been times when I thought if I don't walk away (or crawl in a bottle of pills, or booze, or whatever) that I would watch myself dissapear forever.

    And, I believe that if my personality were just a shade different I WOULD walk away. That's how hard it is sometimes. But, luckily, I'm not much of a drinker, hate taking pills and am just mean enough that I refuse to lose at anything, including seeing my husband beat cancer. So, to a certain extent, I'm still here out of spite!

    Some people aren't that mean or that strong or that emotionally capable of dealing with this beast. And, I, for one, can truly understand that.

    Does any of the above make any sense?

    Yes, it makes perfect
    Yes, it makes perfect since.
    As a caregiver of 2 years, I am still not sure what I am supposed to do, or more importantly, what I am supposed to feel. I have completely lost any personal identity
    that I had, and most days am not sure who I am anymore. I am not a pillow fluffer, but
    try very hard to be considerate and caring. I am here, for 2 years I have never asked
    another soul to take him to chemo, fluids, labs, numerous surgeon appointments. I have
    slept in hospital rooms, stayed up all night as well. I have cleaned up poop, pee,
    blood,and vomit. I am still here. Before this I ran my own company and worked long hours,
    for 19 years. Now I do not work. I know that he has and is suffering, I know that he
    is afraid of the future. But speaking as a caregiver, we are not perfect. We get
    scared. We get afraid of the future too. I am constantly afraid if I will be able to
    handle what "may come". I don't drink or run away (where would I go??)
    But I am sure I withdraw some, and get mean at times. Hopefully, this explains a little what "this caregiver" feels.
  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Sorry
    Sorry you don't have that support. I'm so glad my husband is supportive and you and your situation has to be so hard. You seem to go with the flow and I'm not sure how you can do that. It's hard for caregivers to be there watching someone they love go through all that this disease entails. I'm hoping that things turn around for you and your husband can see you need him. I'm glad that you come here and share your life with us, you are a great assest to this board.

    Hugs! Kim
  • laurettas
    laurettas Member Posts: 372
    Buzzard said:

    LOL........
    Quote...."Don't you think it is fear? Cancer scares us so much and I think it is just more than some people can handle. And I think it is a sex thing also. I have seen the same thing when a spouse dies. The widower is much more likely to quickly jump in to another marriage than the widow. Don't think many men have learned how to deal with those strong emotions and tend to run from them.".......unquote


    ......May I ask where you get your statistics ? or is that simply cannonfodder from a relationship gone wrong ? Some of that stereotyping is why that most men don't get their children in custody battles unless the wife is considered "loonytoons" or the man pays an unexorbitant amount of child support because the wife has to live as she did before, whether the kids are cared for or not ?

    Not sorry, they are your feelings.....and these are mine on that subject...and yes my relationship with my wife is in the chitter but we have managed to become friends to keep our household together and for the sake of our children.

    This is not against you personally, I admire anyone and everyone that faces this beast caregiver or patient, the journey is the same but the end result isn't, and whether we are man or woman we maybe instead of ridicule (maybe a little rash but loss for a better term) we support each other and instead of blaming a man for maybe not having inner feelings become aware that someone in the family group has to have a leadership role, and in my family I am considered a leader with my wife 50% in every aspect of our decisions of family matters, when I become inable to lead then she will assume the Alpha role in the relationship and all will still be well...Its not because men or women are less heartfelt, or stronger, its the ability to be a partner in every aspect of a relationship, and to know that when one partner slips the other is there to catch and visa versa, no matter who is caregiver or who is patient......We are all equal, all have the same basic instincts, and all share in success and failure, we should never side when it divides us, for then we find weakness, and as a whole we can better our chances at survival by being bonded at the hip in this journey.....Please take this as an act of clearing up something that just seemed to hit me wrong and probably at a bad time for me, and not personally, as I say things sometimes that I don't really mean but tend to say it anyway.......Love and my best to you........Clift

    I'll try again
    After re-reading my post, I understand why you might be upset. I didn't say that as a slam to men but a sad reality for many men. They, especially the older generations, often don't know how to deal with deep, painful emotions. They were not taught, nor allowed, to express emotion. I think that is less the case for younger men but certainly true for the older generations.

    I did notice, as well, that the ones lamenting the lack of support from their spouses/partners were women. That is one reason I thought it might be something stemming from male/female differences. The statement on widows/widowers is something I have read several times over the years and also something I noticed among family and friends that supported that fact.

    For me to understand that it might be an issue that many men in general might struggle with would help me to understand that I might not just be married to a jerk. I am not in that situation so don't know how my husband would react, but if I were, I would find consolation, I think, to understand that the problem may not be his as an individual. Does that make sense? Hope so!
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    For Brenda and All the Caregivers....
    I wrote this chapter a few months ago, but this post seems relevant for me to post some excerpts about this very hot topic.

    From the Caregiver's perspective:

    They are the first ones in line to stand by our sides when we are just starting out. They are the last ones in line if we end up approaching an end-of-life scenario. They will be the “Last of the Mohicans” left standing when it’s time to pick up the pieces of their lives, when all is said and done and the tears have stopped.

    BREAK

    What these relationships represent for all of us is the “First and Last Line of Defense” in our cancer battles. They are the first ones in line to stand by our sides when we are just starting out.

    “Remember the words we promised each other in our wedding vows – In Sickness and In Health?”

    “They were just words back then, right?”

    None of us ever really thought we would have to “Cash in that Chip” and actually have to take on that kind of responsibility when we said “I Do”.

    We were young and healthy then with our whole lives stretched out in front of us. So when the minister uttered that phrase during the ceremony, we happily nodded our heads in agreement and hoped that this day would never come.

    “But, it did come, didn’t it?”

    Just like that, the life that we thought we knew was gone forever with those three little words from the opening chapter.

    BREAK

    I think that the caregiver role must be extremely difficult to handle for many reasons. To begin with, the first rule of thumb is that the caregiver now looks at their partners and begins to envision a life without them for the very first time.

    That’s a lot to chew on with the first bite and can be very disconcerting for us to come to grips with. A lot of us have families with children and you’re left thinking to yourself how are you going to do this without my soul mate? These are sobering thoughts to have to contemplate. There’s a part of your brain trying not to think about it, but then there’s that corner of the mind that just can’t help thinking about it either.

    These are not morbid thoughts; rather they are just human nature. You can’t help but stare down the road at a possible reality and acknowledge what could be your situation. It may not happen of course, but this is just part of your survival mechanism that is tapping into your subconscious and “Acting Out” on you.

    Please do not beat yourself up over this. It does not mean that you have given up or are thinking the worse. It’s the survivor mode mentality that we talked about earlier, and let’s face it, SURVIVAL is the strongest instinct that we have going for us. It’s only normal to have thoughts about “What’s Next After This?”

    BREAK

    Yes, it’s a tough and thankless job, even on the best of days and circumstances. We often don’t say “Thank You” or “We Love You” or even better, “We Appreciate You” nearly enough. Some of us are so thoughtless, that we never get around to saying it.

    So, let’s “Right this Wrong” while we are thinking about it. All of us take a moment here and reach over and hug our partners and tell them how important they are to us and how we really value their unselfish service and commitment. We don’t want to think about a world without them in it. They really do make our world spin on its axis.


    FROM THE PATIENT'S PERSPECTIVE:

    Well, to start with, we feel helpless and even worthless at times. This is not the way that we wanted it. This is not the way that we drew it up on the map. We have these feelings because we have lost our ability to contribute to the common cause and we are forced to temporarily sit on the “Sidelines of Life” as the parade goes marching by.

    At a much deeper level, we are feeling vulnerable and weak. Where we once had strength, we now feel tired and puny. We begin to wonder to ourselves if we are ever going to get back to a fraction of the person that we were before. This scares us a little because for so long we’ve stood on our own two feet, made our own decisions, and handled our own business. Now we need some help and we’re not very good at needing help, are we?

    BREAK

    Whether we are the patient or the caregiver, there will be a lot of give and take as the battles wear on. There will be times when things are thin – and other times they are flush. Sometimes we are the windshield – other times we are the bug.

    Cancer is going to beat on us and there will be times when either party might just want to throw in the towel. It’s during these trials that we must be our strongest, because as with any storm in our lives, this too will pass if we can just weather through it.

    BREAK

    Where once we were able to do for ourselves, we now find ourselves relying on our caregivers to have all of our needs met. As time goes by and we can begin to do the little things for ourselves once again, we find that we have moved off the physical reliance and over to emotional reliance with our partners.

    Caregivers were already taking the physical needs off of our plates and now for dessert, we throw in our emotional needs and expect them to step up and take care of those as well.

    “Are we asking too much?”

    Unfortunately the answer is yes we are. No one person can be the “One Stop Shop” for all of our partner’s needs - and this is true even without cancer, much less with it.

    If we are not really careful all of this will eventually build to a crescendo. After all, a person, even one who loves you can only take so much before they begin to crack, break and start to show signs of stress.

    This is going to lead you down the path towards those tried and true feelings – “Bitterness & Resentment.”

    BREAK

    I guess what we really want is for them to “Kiss it and Make it all Better” just like when we were kids and scraped our knees on the playground. I suppose at the basic root of the issue is that we really want to be nurtured and comforted.

    BREAK

    Ultimately, what I think the caregiver is really feeling is the accumulation of everything that they have to deal with since your journeys both began and in a word it’s called SUFFOCATION.

    It’s easy for their feelings to turn to bitterness towards you. They are angry that all of this is happening to you and them. They are upset that your treatment plan is not going according to their timetable that they want you to have. They just want things to get back to the way they were before all of this.

    This makes it easier for resentment to set in as well. Since they are doing so much for you to care for your needs and are currently not having their needs met, they are a little miffed at you for not being there for them.

    Now, they understand that you are sick and not yourself, but still they are ticked off at you in a certain respect, plain and simple. Sorry but that’s the truth of the matter. This doesn’t mean that they don’t care for you – they are just really mad at the overall situation and don’t have a good avenue to vent their hostility, so by default you get the brunt of their frustration.

    Cancer just loves a “House Divided.” It makes it much easier when it sees the home team coming apart at the seams and in disarray. Cancer is a dirty fighter and will take any angle to drive a wedge between you and your partner.

    BREAK

    Please forgive us?

    I want to thank all of the caregivers for all of the sacrifices that you make for us, we really do need you and appreciate all the things you do and how much of your time that you invest with each one of us. You have my utmost admiration for all of the work that you do and the kinds of people that you are. You are a very special group of folks.

    Thank you everybody - I know Brenda has been having an extremely difficult time and said "someone should write a book on how people should feel." I'm in the process of doing just that for people just like her. This is part of my caregiver chapter.

    With much love and respect to all:)

    -Craig
  • Buckwirth
    Buckwirth Member Posts: 1,258
    eibod said:

    Yes, it makes perfect
    Yes, it makes perfect since.
    As a caregiver of 2 years, I am still not sure what I am supposed to do, or more importantly, what I am supposed to feel. I have completely lost any personal identity
    that I had, and most days am not sure who I am anymore. I am not a pillow fluffer, but
    try very hard to be considerate and caring. I am here, for 2 years I have never asked
    another soul to take him to chemo, fluids, labs, numerous surgeon appointments. I have
    slept in hospital rooms, stayed up all night as well. I have cleaned up poop, pee,
    blood,and vomit. I am still here. Before this I ran my own company and worked long hours,
    for 19 years. Now I do not work. I know that he has and is suffering, I know that he
    is afraid of the future. But speaking as a caregiver, we are not perfect. We get
    scared. We get afraid of the future too. I am constantly afraid if I will be able to
    handle what "may come". I don't drink or run away (where would I go??)
    But I am sure I withdraw some, and get mean at times. Hopefully, this explains a little what "this caregiver" feels.

    Caring for the Caregiver

    ...for 2 years I have never asked another soul to take him to chemo, fluids, labs, numerous surgeon appointments....



    eibod,

    What you describe here is the reason many primary caregivers burn out. As a patient, I look for someone other than my wife to take me for fluids, labs, chemo, and the various other things that this disease entails.

    Being a caregiver does not (and should not) mean doing it alone. When my mother had pancreatic cancer, my father was the primary caregiver, but both my brother and I spent every minute with him and with her helping out where we could. This meant that my dad had time to himself, to recharge his battery.

    Part of being a caregiver for Pete43's wife was running the family business.

    Marie mentions her disappointment in her husband, but in other posts has praised how her kids stepped up their game.

    The caregiver is rarely a single person, rather it should be a team, one is primary, but the others help keep everyone sane as well as healthy.

    Here is a site that should help:

    LIVESTRONG Get Help
  • eibod
    eibod Member Posts: 160
    Sundanceh said:

    For Brenda and All the Caregivers....
    I wrote this chapter a few months ago, but this post seems relevant for me to post some excerpts about this very hot topic.

    From the Caregiver's perspective:

    They are the first ones in line to stand by our sides when we are just starting out. They are the last ones in line if we end up approaching an end-of-life scenario. They will be the “Last of the Mohicans” left standing when it’s time to pick up the pieces of their lives, when all is said and done and the tears have stopped.

    BREAK

    What these relationships represent for all of us is the “First and Last Line of Defense” in our cancer battles. They are the first ones in line to stand by our sides when we are just starting out.

    “Remember the words we promised each other in our wedding vows – In Sickness and In Health?”

    “They were just words back then, right?”

    None of us ever really thought we would have to “Cash in that Chip” and actually have to take on that kind of responsibility when we said “I Do”.

    We were young and healthy then with our whole lives stretched out in front of us. So when the minister uttered that phrase during the ceremony, we happily nodded our heads in agreement and hoped that this day would never come.

    “But, it did come, didn’t it?”

    Just like that, the life that we thought we knew was gone forever with those three little words from the opening chapter.

    BREAK

    I think that the caregiver role must be extremely difficult to handle for many reasons. To begin with, the first rule of thumb is that the caregiver now looks at their partners and begins to envision a life without them for the very first time.

    That’s a lot to chew on with the first bite and can be very disconcerting for us to come to grips with. A lot of us have families with children and you’re left thinking to yourself how are you going to do this without my soul mate? These are sobering thoughts to have to contemplate. There’s a part of your brain trying not to think about it, but then there’s that corner of the mind that just can’t help thinking about it either.

    These are not morbid thoughts; rather they are just human nature. You can’t help but stare down the road at a possible reality and acknowledge what could be your situation. It may not happen of course, but this is just part of your survival mechanism that is tapping into your subconscious and “Acting Out” on you.

    Please do not beat yourself up over this. It does not mean that you have given up or are thinking the worse. It’s the survivor mode mentality that we talked about earlier, and let’s face it, SURVIVAL is the strongest instinct that we have going for us. It’s only normal to have thoughts about “What’s Next After This?”

    BREAK

    Yes, it’s a tough and thankless job, even on the best of days and circumstances. We often don’t say “Thank You” or “We Love You” or even better, “We Appreciate You” nearly enough. Some of us are so thoughtless, that we never get around to saying it.

    So, let’s “Right this Wrong” while we are thinking about it. All of us take a moment here and reach over and hug our partners and tell them how important they are to us and how we really value their unselfish service and commitment. We don’t want to think about a world without them in it. They really do make our world spin on its axis.


    FROM THE PATIENT'S PERSPECTIVE:

    Well, to start with, we feel helpless and even worthless at times. This is not the way that we wanted it. This is not the way that we drew it up on the map. We have these feelings because we have lost our ability to contribute to the common cause and we are forced to temporarily sit on the “Sidelines of Life” as the parade goes marching by.

    At a much deeper level, we are feeling vulnerable and weak. Where we once had strength, we now feel tired and puny. We begin to wonder to ourselves if we are ever going to get back to a fraction of the person that we were before. This scares us a little because for so long we’ve stood on our own two feet, made our own decisions, and handled our own business. Now we need some help and we’re not very good at needing help, are we?

    BREAK

    Whether we are the patient or the caregiver, there will be a lot of give and take as the battles wear on. There will be times when things are thin – and other times they are flush. Sometimes we are the windshield – other times we are the bug.

    Cancer is going to beat on us and there will be times when either party might just want to throw in the towel. It’s during these trials that we must be our strongest, because as with any storm in our lives, this too will pass if we can just weather through it.

    BREAK

    Where once we were able to do for ourselves, we now find ourselves relying on our caregivers to have all of our needs met. As time goes by and we can begin to do the little things for ourselves once again, we find that we have moved off the physical reliance and over to emotional reliance with our partners.

    Caregivers were already taking the physical needs off of our plates and now for dessert, we throw in our emotional needs and expect them to step up and take care of those as well.

    “Are we asking too much?”

    Unfortunately the answer is yes we are. No one person can be the “One Stop Shop” for all of our partner’s needs - and this is true even without cancer, much less with it.

    If we are not really careful all of this will eventually build to a crescendo. After all, a person, even one who loves you can only take so much before they begin to crack, break and start to show signs of stress.

    This is going to lead you down the path towards those tried and true feelings – “Bitterness & Resentment.”

    BREAK

    I guess what we really want is for them to “Kiss it and Make it all Better” just like when we were kids and scraped our knees on the playground. I suppose at the basic root of the issue is that we really want to be nurtured and comforted.

    BREAK

    Ultimately, what I think the caregiver is really feeling is the accumulation of everything that they have to deal with since your journeys both began and in a word it’s called SUFFOCATION.

    It’s easy for their feelings to turn to bitterness towards you. They are angry that all of this is happening to you and them. They are upset that your treatment plan is not going according to their timetable that they want you to have. They just want things to get back to the way they were before all of this.

    This makes it easier for resentment to set in as well. Since they are doing so much for you to care for your needs and are currently not having their needs met, they are a little miffed at you for not being there for them.

    Now, they understand that you are sick and not yourself, but still they are ticked off at you in a certain respect, plain and simple. Sorry but that’s the truth of the matter. This doesn’t mean that they don’t care for you – they are just really mad at the overall situation and don’t have a good avenue to vent their hostility, so by default you get the brunt of their frustration.

    Cancer just loves a “House Divided.” It makes it much easier when it sees the home team coming apart at the seams and in disarray. Cancer is a dirty fighter and will take any angle to drive a wedge between you and your partner.

    BREAK

    Please forgive us?

    I want to thank all of the caregivers for all of the sacrifices that you make for us, we really do need you and appreciate all the things you do and how much of your time that you invest with each one of us. You have my utmost admiration for all of the work that you do and the kinds of people that you are. You are a very special group of folks.

    Thank you everybody - I know Brenda has been having an extremely difficult time and said "someone should write a book on how people should feel." I'm in the process of doing just that for people just like her. This is part of my caregiver chapter.

    With much love and respect to all:)

    -Craig

    Hi Craig, I have been
    Hi Craig, I have been reading your chapters as you post them. This post is certainly
    "right on" target. Suffocation is a word that I had not used, but really describes the
    feelings. I think my post sounded bitter earlier, I did not mean to. It is as you stated life has certainly changed, and we look around for someone to blame. I have to admit that sometimes I do find myself being angry at him, then the guilt sets in and that is just as bad. I appreciate this site so much. I feel like an intruder sometimes, because I am not
    the one with cancer. But it helps me so much that I keep coming back! The actual support
    group in our city is at the hospital on the chemo ward. I feel uncomfortable there since
    that is the location of the onconologist, labs, and his professional caretakers. I mean
    how could you go to a meeting there and vent as to how miserable you are when so many of
    those people know your husband and treat him? So I will return the "thank you" back to
    you wonderful people on this board. Even though everyone has their own battles to fight,
    the care for others always shines through. Brenda